What’s Blue and White and Read All Over?

The left breast of a woman who’s been set up for radiation. (Not to put too fine a point on it, mine.) It’s blue because that’s the color sharpie marker the radiologist and her helpers use to mark up your breast so they can figure out where to direct the radiation. It’s white because, well, that’s what I am. Read all over? A stunning number of people (all women, all medical professionals) spent a stunning amount of time yesterday studying the markings and talking about them.

The whole time I was lying flat on my back with my left arm over my head, thinking maybe it would all go better if I could just sleep.

Oh, one other thing. Around the holidays, the preferred jewelry of fifty percent of the nurses I ran into turned out to be made out of Christmas lights. Earrings. Necklaces. Some lit up. Some not. You notice stuff like that when you’re flat on your back.

And I also want to mention that I now have four very small tattoos on my left breast. That they’re there to guide the radiologist amuses me. It’s never occurred to me to get a tattoo, but I’d have said if I did it would be voluntary and something a little more interesting than a dot.

The setup appointment was sandwiched between two research appointments. I like doing these studies. There are a lot of them going on at UCSF and they all aim to make life better for breast cancer patients. It gives me a lot of pleasure to think that I’m part of something like that, even if all I have to do is have my blood drawn or my arms measured.

And now, a little breather until next week, when things begin in earnest.

At the Spa, They Have Better Magazines

Don’t get me wrong, I’m grateful to whoever funded the nice waiting room at the Breast Care Center at UCSF, the one that looks like the place you sit while you wait for a beauty treatment at a so-so spa.

But you know, you’re not at a spa. Here are the clues:

• Bad magazines. At spas, you get to read Vogue, and Martha Stewart and People and In Style. Here, there’s a rack of magazines directly across from you and the selection is worse than what you get on Southwest Airlines when you’re in the C minus boarding group. (The one you’re in when you show up afater all the people in the C boarding group.)  Things like American Hunter (I’m not kidding), Golf (with a guy on the cover demonstrating a swing), and Tennis (Andre Agassi, farewell).
• The woman next to you is filling out a questionnaire in Russian, and she’s muttering things under her breath that don’t sound like happy spa talk.
• The chairs are really, really, really close together and there’s no fruit on the coffee table or tea in an urn to the side. You can hear the woman next to you breathing shallow worried breaths. Next to her, there’s a woman in a wheelchair who’s got an oxygen mask on her face. You try to maintain your privacy by looking up at the magazine rack and wondering why every magazine in it has a picture of a guy on the cover.
• The woman who comes to get you isn’t going to give you a massage. She’s going to smush your breasts into a machine that was not made for your comfort and convenience, but for that of the doctors who’re waiting to look at the pictures she takes.  The doctors who never even come out and say a word to you.  And she’s not going to tell you to breathe deeply, the way the nice massage therapist does. Nope. She’s going to tell you not to move and whatever you do… don’t breathe.

So I didn’t. Breathe that is. Next time, I’m bringing them some new magazines, so at least I have something to look at that’s sort of interesting. As for breathing?  I’m planning on doing more of it, even if they tell me not to.

You’re a 46 year old woman

After a three month break, during which time I unsuccesfully tried to schedule radiation at a facility closer to my house, it took one phone call to set in motion the most efficient medical process I’ve yet to participate in.

I don’t know if it’s like this everywhere, but the people who do the scheduling at UCSF, where I’ll be having six weeks of radiation treatment for breast cancer, are a marvel. They get you in as soon as they can, they have real live people with real live phone numbers call you, they look you in the eye most of the time when they talk to you and seem to get that you’re a person, not a sickness.

But even so, it’s quite obvious that the medical system is set up in ways that are not always good for you, the person seeking care. Here’s an example.

When I went in for my first meeting, a very nice young woman, a resident, took my “history.” Taking a patient’s history is a basic medical skill, one in which the doctor must be sure they understand who the patient is, what their current complaints are, and what their past medical issues might have been — all this with an eye to making sure they know the patient as a whole, so they don’t well… kill them by prescribing something they’re allergic to.

Given these goals, you’d think the person taking your history would ask you questions and listen to you speak. But this resident didn’t do that. Instead, she looked at me, and her notes, and told me who I am. It was a very odd experience and went something like this:

• She: You’re a 46 year old woman who didn’t feel a lump.
• Me (in my head): Why are you telling me who I am? I know who I am. You’re the person who doesn’t know who I am.
• She (glancing down at the chart): And you had first a follow up mammogram and then a biopsy.
• Me (in my head): well, duh.
• She: And… you blah, blah, blah,blah.

It was a remarkable, surreal conversation. And as it was happening I felt increasingly angry. Possibly, I am angry a lot these days because I don’t like being a patient. But what I really don’t like about being a patient was on display in this very moment. It was this: being spoken to in this way, by someone who’s suddenly so in charge of me that she can actually tell me who I am, is one way in which the medical care system takes power away from you. The ability to tell your own story is one sign that you are in control of your life. When someone else starts telling your story for you, well, that says even this most basic of things, your ownership of your history, is out of your hands.

And that is something I don’t like one bit.

I resist of course. I find myself taking the history of the resident and the doctor with whom she works in the way I wanted them to take mine. I talk about things we have in common: children, professional careers. I ask them questions about themselves, about where they’re from, what their hours are like. When I do this, I feel less and less like they are in charge of my life. I feel like it is becoming clearer to them and to me that they are in my employ. Not the other way around. I’ve hired them to give me something I need. I expect them to do a good job. But that doesn’t mean I am in their power. My history belongs to me, not to them. It is what I make of it, not what they tell me it is.